Just wondering if anybody else feels/believes there may be a connection. I have been diagnosed with complex post traumatic stress disorder. Trauma on top of trauma on top of trauma. I am age 66. I am wondering if there could be a connection between so much trauma and the development of this cluster of illnesses. 12 years on pred, 2nd year on Actemra. Just can't seem to get it under control. Am in therapy. Have been for 10 years. Am a very strong person, a people pleaser. Like peeling the layers of an onion getting to bottom of childhood trauma.
Also, the only other connection I can find is a tendency for all my friends I talk to have auto-immune is the chicken pox virus. Any thoughts.
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phebamom
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I did not undergo childhood emotional abuse and I haven't had chicken pox. I have, however, lived through quite a lot of stress (multiple bereavements, major family illnesses, repeated redundancy, high/unfair levels of responsibility at work etc. )
I worked at a large corporate office back in the mid 90s. I was in accounting, but was in charge of the switchboard and front office the last hour of the day. I had 7 things that had to be done before I went home, turn off switchboard, lights, finish the mail, etc. I had been sick with what I now know was PMR, but at the time was unknown, fevers, weakness, pain, confusion. I forgot to set the UPS outside of the corporate office doors for pick up. 7 factories did not get their payroll checks because they were in the UPS bag. I was so traumatized by that I began with OCD behaviors I still have, double and triple checking everything. That was a long time ago, but I still carry the trauma from it. So, you are correct, it is not just childhood trauma that can harm us.
I don't know about you, but the double triple checking is exhausting. Going to bed takes an extra half hour just to check that everything is turned off, locked up, etc. It gets old.
I might not be quite as bad at multiple checking now I am distracted ... by monitoring my PMR symptoms ... which has possibly taken over that role. Another destructive obsession?
Let's get chicken pox out of the way first. nearly everyone has had chicken pox, even those who believed their whole lives they hadn't until tested (like me).
Yes, I think it's pretty definitive that trauma and stress do contribute to the development of autoimmune conditions, as they probably also do to outher kinds of illness. Trauma in childhood could set the stage for something occurring later in life, but this is not necessarily inevitable. I think there is often a genetic component which could affect the way an individual's body responds to stress, with some of us more vulnerable to developing an autoimmune condition rather than, say, cancer or heart disease. And then there's the environmental component including the way we try to maintain our health, or not, throughout life, as well as exposure to many different kinds of virus, accidental injury, etc. Very complicated!
Heron, did you get just a blood test for chickenpox? To my knowledge i never had it, nor my brother and sister. How does it go undetected? No blisters?
Yes. I just asked my doctor and she added it to my regular tests. You can have what they call a subclinical case. I think my younger son must have also. He was still young enough that he and his older brother were bathing together when the older boy picked up chicken pox (he had a very mild case). Younger boy never showed any sign. And their sister didn't develop chicken pox until several years later. It was the closest exposure to CP that I am aware of ever having, but perhaps I was already immune by then. It took a while before I decided to go for the Shingrix vaccine and really it was all the vaccine chatter this year surrounding covid that got me geared up for it. Hubby had it several years ago and was wiped out for one day with the first and two days with the second dose. But in the end I did not react nearly as severely, although it was certainly the strongest reaction I've ever had as an adult to a vaccination. And it had no adverse effect on PMR, rather the opposite as my taper went a bit better for a few weeks.
Trauma, especially childhood trauma has a profound affect on the mind and body. Have you ever read The Body Keeps The Score: Brain, Mind and Body in the healing of trauma by Bessel Van der Kolk? It explains what happens after trauma and how it affects health. However, it ends positively in that the message isn’t just, “it messes you up”, but how you can take steps to heal in conjunction with therapy.
I just put a bunch of those types of books on hold at library. I have been in counseling for 10 years, have undergone regression hypnosis therapy, etc. It just feels like I spent my life waiting for someone to pull the rug out from under me. I am thinking that type of stress is not good for the immune system. The reason I asked about chicken pox is that a study was done. The chicken pox virus was the only thing found in over 60 percent of patients with PMr/GCA. But, you are correct. Stands to reason that would be the case as almost everyone has had exposure to the virus. It would be interesting to know what causes this illness so it could be prevented.
I suspect it is such a complicated mix of genetics, illness, physical trauma, mental trauma, unrelenting stress, environmental pollution, toxins, diet, sleep pattern, etc etc that The cause is never a single thing. Our bodies put up with so much but sometimes they become confused and the immune system attacks its own camp due to a permanent fight or flight setting. Childhood trauma can seem like a bottomless pit, but there can come a point where it doesn’t run the HQ. The book I recommend is positive without being happy clappy, just do this blah blah. It’s also not too long!
I think it entirely possible there can be an exposure to disease organism component to at least some cases of PMR. There's getting to be fairly clear evidence that MS is caused by Epstein-Barr, and a couple of months ago there was a discussion on here which included mention of some of us having had infectious mononucleosis (glandular fever) in younger days, a disease which is caused by Epstein-Barr virus, although I didn't know this when I had it aged 19-20. Because we have different genetic makeup and life experiences, diet, other conditions, etc., also play a part, the virus would only be one factor in possibly developing PMR (or any other chronic conditiion).
However you want to look at it though - it is likely to be the prod at the immune system that is part of the mechanism. They have looked at a viral trigger = but nothing was identified that was common to all. Except the fact almost everyone has had one or more viral infections at some time. And sometimes not long before PMR developed.
I've been particularly interested in this because of the issue of brain fog. I believe I already mentioned in that other conversation that I'd blamed what I would now call brain fog on the birth control pill, which I coincidentally was taking at the same time as I was sick with what turned out to be mononucleosis. i stopped taking the pill because of this, but to be honest I do not think my brain has ever worked the same way it did before. An analogy would be to compare seeing the world with perfect vision with seeing the world through dirty lenses.
All of this, the PMr/GCA symptoms began with a fever of 101.5 to 102.5. The fever lasted from November of 1995 thru March of 1996. I have never been the same.
Also, every single time I step foot on a college campus I get walking pneumonia. that is a mycoplasma infection. I was going to college at night in 1995 when all of this started.
My goodness...this is such an unfathomable question and one that probably can't really be answered with any real measure of accuracy..... Is it nurture or nature that contributes to developing these conditions?
I agree with what's been said so far and some of you will know from my previous posts that my younger sister and I lost our mum at 18yrs and 14yrs respectively. We were both completely devastated as you can imagine, but it affected us in different ways and with different life outcomes as a result.
I went through all the recognised stages of grief......disbelief, denial, anger etc and then set about the task of getting on with life as mum would have wanted me to. This involved working as a nurse, running the home, supporting my dad and being a substitute maternal figure for my sister. She however never cried or showed any emotion, never wanted to speak about it and became defiant and rebellious. She stole money from dad, a gold chain our grandma had given me and eventually decided to move out of our family home into a shabby little bedsit.
I'm pleased to say she's not that person any more nor has been for many years, but she still always holds her cards close to her chest and has over the years become more and more of a recluse, virtually never leaving the house other than to walk to the local supermarket when necessary. She also lost all her hair and has had to wear a wig for the last 35yrs.
I on the other hand, love to socialise, have lots of friends and feel comfortable meeting new people.
Like most of us, my sister has experienced many deeply stressful times throughout her life and developed PMR in her 50s. Less than 2yrs later she was both PMR and Pred free and has been for the past 10yrs!
I too have had my share of very challenging times and now into my 3rd year of PMR.
Interestingly, my father had PMR/GCA for the last 8yrs of his life too.
So, was it the stresses of life that have caused all 3 of us to develop PMR/GCA, or were we all genetically predisposed to developing the condition anyway!
I suspect it was a combination of both, and for most people, stressful life experiences, differing lifestyles and individual metabolic differences will all contribute to the 'hows' and 'whys' we develop autoimmune diseases.
So... I definitely think some of us are already predisposed to developing PMR and some may develop it as a result of some kind of 'trigger' - eg. trauma, stress, a virus, surgery, etc. How we decide the cause of our own condition is unfortunately yet to be discovered but there's one thing that's certain, and that is that stress or life traumas can definitely aggravate and exacerbate PMR/GCA once you're living with it.
I think if you try to identofy a reason for having developed PMR you will end up in a worse mental state than ever!! You will go round in circles with what ifs and get nowhere except confused.
No two of us have similar backgrounds and it is a build up of insults to the immune system that at some point has one straw too many and sends it crashig to the floor, it goes haywire and turns on our body, unable to recognise it as self.
Don't get me wrong - I'm not saying it didn't have a role to play, but it is by no means something you could put your finger on and say "That was it ..." It isn't as simple as that by any means.
Just like the chicken pox theory - there were also many people who have developed GCA where they didn't find the virus present in the temporal artery biopsy - and as HeronNS says it is extremely likely that we have ALL had CP at some point, even if we or our parents didn't realise. So far no single component has been identified that every patient studied has experienced - except being alive. And being alive at all is pretty stressful all ways round!
Actemra does seem to be helping except for high blood pressure, which is still out of control. The infection seems very timely. I ran a fever of 101.5 to 200.5 from November thru March of 1995- 96. This was also during a divorce from an abusive spouse and a lot of other stressors. I am wondering if the combination of factors may to be to blame. Just bad luck, bad timing, bad genes. Good to hear from you dad2cue
I’ve had my share of stressors with my mom growing up, which have recently been resolved. In addition I developed PTSD from my work (specializing in supporting folks impacted by sexual trauma). After 18 years of hearing the stories of sexual trauma it took its toll. I had to retire early at age 55. Glad to say it has resolved as well with life changes and professional therapy.
PMR started 18 days after I moved, got married and retired (loads of “good stress, yet stress all the same). I believe these factors led to my developing PMR as when I had workplace PTSD, I was on constant high alert with cortisol spiking repeatedly.
The thing is I will never truly be able to answer the question “Why did I develop PMR?” I now focus on what I can control such as balancing rest and activity, diet, who I receive support from. I’ve done plenty of “work” (emotion wise with the help of my therapist), to resolve issues/relationships and live a calm, peaceful life (which is helpful for those of us with these AI conditions).
As some here have already mentioned, many of us have had chicken pox and/or dealt with trauma of some kind, yet the % of people with PMR/GCA is still relatively small in comparison.
All the best to you moving forward. Hope you can get resolution around your questions, and so glad you are being supported through the process. C-PTSD is certainly a challenge.
My brain gets caught in repeating loops of rumination. When that happens I can feel it making the PMr/GCA flare. I take a medication called BuSpar. The only thing that keeps the ruminations away. Also, and I apologize if this is a bit off topic. There is a web-site called "Flying Monkeys Denied". They have some great essays that have helped me a lot. Figure not too off topic since emotional stress seems to exacerbate this illness.
There are studies now showing an association between childhood trauma and chronic illness in adulthood. I think it is definitely a contributor, but as others have said you need to have the right genetic vulnerabilities for a disease as well. What happens is that we tend to have a genetic vulnerability for certain things, but then the environment either triggers/switches on those genes or doesn't.
I have an extremely high ACE score for childhood trauma plus a family history of overactive immune systems with extreme allergies, so I'm not really surprised I've ended up with so many health issues as an adult. I've got both the genes and the environment going on.
I've been doing EMDR since last year as a treatment for my trauma, and it is absolutely incredible. I've tried many therapies (hypnosis, mindfulness, CBT, self-compassion) and have made progress using those, but nothing as dramatic as this. I highly recommend finding a psychologist with the proper training. The EMDRIA website helps you to locate therapists who are properly trained in this therapy (just emphasising that bit as it's become so trendy that some people are offering it without really knowing what they are doing).
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